Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Saturday, 28 July 2012

My boob outing to the Olympics may be off the agenda now - my infection has got stacks worse despite being on mega-strength antibiotics for five days, and I've just spoken to the hospital. The doctor there has told me to get up there as quickly as possible, with an overnight bag packed, and I may be kept in overnight on intravenous antibiotics. More needles, less tennis, to be honest I've had better weekends. It looks like they may also cancel my operation - they can't do the mastectomy while the infection is still there. I'd better go and iron my sexy best pink spotted pyjamas and then pack, once I've eaten a whole box of chocolates courtesy of WM's lovely sister and brother-in-law. Quite frankly, sod the cancer-curing diet today.

Wednesday, 25 July 2012

Yesterday was spent mostly at the hospital, which I've renamed The Torture Theme Park, which I know isn't really fair because all the people working there are universally kind, concerned, supportive and friendly, but what they have to do to their patients isn't always very pleasant. Meeting my new surgeon for the first time was good - he is definitely on my list of new favourite health professionals too. He was kind, listened, allowed me to negotiate treatment and took me seriously, whilst also being an obviously competent practitioner with a real human warmth. Just like everyone else at the TTP actually - where do they find them all?

It was a little bit frustrating because the clinic was running 2 hours late, but I try really hard not to mind because everyone they are seeing must be worried out of their mind about their own cancer, and at least it shows that everyone is given time and consideration during their appointment.

Mr Lovely had a good look at my breasts and told me I had yet another infection, so more antibiotics to take. (Later when I got them home I was a bit shocked at their size. Are they trying to make NHS cost savings by choking me to death on their tablets to prevent spending money on my expensive cancer treatment? A horse would have trouble knocking them back in one go!) Surgery is on Monday, and we talked everything through at length. He totally understands my reticence about losing the lymph nodes under my left arm, and he was happy to negotiate. We agreed he would take one to test, and if cancer cells were lurking there, he would take a few more to a maximum of 4. Even if they are all riddled with nastiness, he'll stop there, and we can talk some more to decide what happens next. However, he did explain that if the cancer has spread to lymph nodes, they have to be removed; chemo, radiotherapy and hormone drugs alone won't sort them out. Then the one breast or two question. He agrees that the left breast should come off too, but it's not as urgent as the right which is still stuffed full of cancer. The priority now is to get me onto chemo as quickly as possible to prevent a major spread, and he doesn't want to do anything surgery-wise that isn't strictly necessary because it would increase the risk of infections or other complications, as well as making my recovery more prolonged, when I need to be as fit and well as possible for the next stage. So the left breast will be removed next summer, when all the treatment currently planned is over. I'm also going to have the portacath fitted on Monday, my nice new little mini-boob, albeit in completely the wrong place, to help them gain access to veins more easily. We then talked generally about my cancer, and he was able to tell me it was Stage 3, Grade 2, and is fuelled by three hormones; HER, Oestrogen and Progestorone. We had a chat about the hormone receptivity, and he confirmed my opinion that this is probably really encouraging because it means that, with Herceptin and Tamoxifen, there are even more pharmaceutical weapons to attack them with. Stage 3 was a bit of a shock, though, because there are only 4 Stages, and with some of them sub-sectioned and the measuring starting with a Grade Zero, I'm fairly close to the top of the tree in terms of seriousness and prognosis. Once home, I looked it all up to help me absorb the facts. If you count all the stages including the Zero and subsections, there are 8 altogether. My cancer is at Stage 3C because it has spread to the lymph nodes, so I'm up to stage 7 of 8 altogether, which is fairly depressing news. Further research showed that only 50% of women at my stage survive 5 years, and only 40% are still around after 10 years, and these statistics are for women who only have one breast cancer; women with two like me are in a much more difficult situation. So my job is to make absolutely damned well sure that I do everything I possibly can to ensure that I am one of the few, and until I start chemo I am very vulnerable to the cancer spreading. So far my research into alternative and complementary therapies and nutritional protection has been very encouraging, and I have a new eating regime, but I must be honest, I haven't been sticking to it religiously every single day, and now I know I must. Stage 3C cancer is a huge wake-up call. White flour and sugar are off the agenda as much as possible, and in their place every day I must take 3 apricot kernels, 3 cups of green tea, over a teaspoonful of turmeric, two aspirin, nuts, seeds, fruit, vegetables, cinnamon, pepper, ginger, garlic, vitamin D and green papaya powder. I also need to spend at least 2 sessions a day sitting doing nothing and totally relaxing, as well as finding a way to visualise my cancer that works for me - visualisation is apparently a big gun when it comes to banishing these things. Then sleeping - at least 8 hours a day, preferably 10. If I do it all there's not a lot of time left in the day. It looks so simple written down, but it is so not me. I don't have a "new-age" bone in my body, I've always eaten on the go, I love biscuits, chocolates, cakes and anything with sugar, and relaxing and sleeping? My gorgeous son with complex needs has spend years training me to sleep in fits and starts - 2 hours uninterrupted has always been a real treat, 5 hours sleep in any one night is a real indulgent luxury. Since the day he was born it's felt like I've been an emergency service on 24/7 call, either because he would stop breathing in the early days, or he would have a destructive and injurious meltdown at any second over the past few years. Relaxing is a really alien concept, but I've got to learn to do it. There isn't any option, to give myself the very best chance I have to embrace it all, from today, with no excuses. This is life or death, and I know which one I'm choosing. At the hospital, I also met with the Physiotherapist, who is delighted with the range of movement I now have in my arm. I have been really good about keeping the exercises going, so I'm very pleased. However, I don't breathe properly. Apparently you are supposed to stick your tummy out when you breath in. Maybe it's because my tummy sticks out so far anyway that to protrude it even further would entail detaching it from the rest of me, but my stomach doesn't even slightly shift. So I have a new toy, a "Spiro-Ball", to play with. It has a little yellow ball that I have to keep suspended in mid-air in the "smiley-face" section when I breath in, and another disk raises to measure my lung capacity. Great fun, and I somehow have to learn how to breathe properly before Monday, otherwise I could be oxygen-dependent post-operatively all over again. I'm doing well though, and I'm becoming a bit religious about getting it right and doing it loads. Last night youngest son wanted a McDonald's. WM offered to go, but I decided it was time to flex my driving muscles and get behind the wheel again. Great fun, even though I did stall it three times before I'd even reversed out of the drive, much to the neighbour's amusement. It's been 6 weeks since I last drove, and after next Monday it could be several weeks all over again, so I thought I should do it before I forget how to drive altogether. Best news of all though, on Sunday I'm off the see the Olympics - the tennis at Wimbledon, with second row Centre Court tickets. I've been really unsure about whether I have the stamina to last the day out, with stacks of walking and horrific security queues to gain access, but I've decided I have to. It could be a very long time before I'm well enough for a family day out, and as the kids get older, family days out that please everyone get harder and harder to achieve. Olympic Wimbledon Tennis floats everyone's boat, and it will be brilliant. My last outing with two boobs, with international, worldwide television coverage. What a fabulous curtain-call for my cleavage, eh? If the infection is over and it's not bright red anymore, I'll wear the lowest cut top I can find, maybe even augmenting it with chicken fillets. I bet there aren't many women who get the chance to literally flash their tits to the whole wide world just a few hours before a mastectomy - please let me know if you see me on telly!

Monday, 23 July 2012

Today is the very last Monday I will ever have boobs - exactly a week today they will be chopped off. Tomorrow I'm seeing the surgeon, a new one, because they need to allocate the operating theatre times so that he as well as the Portacath surgeon can both do what they have to do to me at the same time. I've written out a list of questions, and the main two focus on whether or not my left boob stays or goes, and whether or not I let them fiddle about with the lymph nodes on the left side. The lymph node removal on the right side has given me nothing but grief. To get there they create a lot of nerve damage, and I still have really unpleasant sensations in my right arm, under the arm is totally numb and feeling will never return, and I have very little strength or co-ordination. I still don't have the confidence to drive because of it. They can never take blood from that vein, I run a high risk of infection from even a tiny paper cut on a finger, and I may develop lymphodema - a lifelong condition where I would then have to wear a flight sock on my right arm 24/7 for ever, and how can you look sexy with that? They now want to do the same to the left side, and I'm left handed, so I don't think so, unless they can convince me my prognosis significantly improves because of it. If it's purely for diagnostic purposes, and won't actually change the treatment plan, then absolutely no.Now on to the boobs. I really can't get my head around losing them at all. I really don't know how I'll feel to be as flat as a pancake, and will people stare when I go out and about? Will it matter if they do? They'll probably look at my big fat belly and nudge each other and say "Look at that poor cow, see how far her boobs have drooped!". Reconstruction and prosthetics will probably be discussed at length tomorrow too, and I have very clear feelings about reconstruction. Sometimes they can do reconstruction at the same time they remove the real ones, and there is a huge bonus because they would make news ones from my big fat belly - so I'd get a much-needed tummy tuck thrown in for free. However, I don't want to get new ones straight away, and I might decide never to bother to go down that road at all. I feel that losing my boobs is going to be a bit of a sad thing. Even though they aren't doing me any favours and are actually trying to kill me at the moment, it will still be hard to say goodbye to them. I think I'll need a period of adjustment, getting used to the fact they are gone, before getting new ones. I think if I woke up and immediately saw newly-constructed imposters I would never feel positive towards them, whereas if I had new ones made in a year or so once this cancer has been banished completely, it would seem like a celebration and I'd have a much better chance of really appreciating them. It's been a very long time since anyone actually found my body irresistibly attractive (apart from WM and I think he is either being incredibly kind or needs new glasses) so boobs or not shouldn't really matter an iota either way, but somehow they do, and I can't really get my head around why. I've got pretty low self-esteem where my body shape is concerned. I've been fighting a losing battle with weight ever since my mid-twenties. Interestingly, last week the hospital told me that as well as having cancer, I also have a goitre, which is a swelling on the thyroid gland in my neck. Now I know it's there it's a really obvious great big lump sticking out, and I'm actually delighted about it. It may mean that I've got an under-active thyroid gland, which could be the reason for my weight, and once it's fixed, I could return to the barely 7 stone weight of my teens and twenties. Well less, actually, because those boobs would be gone. A girl can dream, eh?

That's if I ever live long enough to lose all that weight. This cancer could go one way or the other, and there are no definite happy endings yet. It's constantly at the back of my mind that I may not make it through this, and that I may never meet my grandchildren just like my mum never met hers. I'm doing everything I can not to dwell on negativity, because that's like opening the back door and inviting depression to come in and make itself comfortable. Depression is the real enemy that causes people to give up hope and actually die.

That doesn't mean I don't get bad days, or bad moments. I do, and fairly often. I'll allow myself to wallow in misery for a cathartic half an hour or so, and then it's over, done and dusted, and I make a calming cup of tea. If nothing else, this cancer thing is demonstrating how short life is, and whether I make it or not, why waste even an extra minute on being sad when you can be happy.

I trained as a Laughter Yoga Leader just before I was diagnosed. Laughter Yoga is virtually everything you need to stay well, happy and balanced, laughing lots, and doing yogic breathing. Luckily for me it doesn't mean putting your feet behind your head. The medical and scientific evidence proves beyond any shadow of doubt that laughing regularly is not only an excellent cardio-vascular exercise, but it also causes positive physiological changes at cell level to promote health, as well as guarding against mental health issues. Laughing every day can actually prevent ill-health as well as being a very effective medicine for those already ill. So I'm laughing all the way through this as much as I can, hoping that I can laugh this cancer away completely. Last week lots of friends came over and I led a Laughter Workshop in our front room, which was brilliant fun, and once I'm over this next session of surgery we'll do it again and again. Friends and family, you've really shown you're true colours over the past few weeks, and you are all amazing, thank you. Your love, support, friendship, care and humour really are everything I need right now, and just a couple of words on Facebook every now and again, or a text, or an email, or a phone call means the world to me. I really feel that every one of you is fighting this thing with me, my very own cancer army. I almost feel quite sorry for that poor little cancer, it really doesn't stand much of a chance at all with you lot on my side.

Tuesday, 17 July 2012

It's been over a week since I last wrote, and I blame that entirely on the fact that I'm now feeling so much better over the past few days that I've been well enough to do all sorts of other things instead. My arm is still annoyingly hopeless, simple things like buttering bread results in the whole kitchen being buttered too. Everything takes longer, but it's still a whole load better, and a whole lot less painful than even a few days ago, so we're moving in the right direction. However, I have absolutely no stamina, my energy levels are running at zero, and I'm totally exhausted the whole time, but it's still good to feel more normal.

I'm now waiting for the Cancer Hospital Theme Park to let me know which ride I'm to go on next, and when.

Last week I saw the vein lady - did she keep looking in the mirror? - someone asked me. No she didn't. She was utterly lovely, warm, knowledgeable, sympathetic and understanding about my needle phobia, and spent an hour talking me through all the options. As well as an extreme needle phobia, I also have lousy veins, the type they need to go excavating deep deep down to try and locate, twisting the needle through chunks of my flesh as they try to drain my blood. Hey, you noticed that? I can write about it without cringing too much and having a panic attack! OK, so my eyes are closed but I'm a pretty good touch typer. That is how good the vein lady was, I can just about face it.

Not only do I have lousy veins, but since those lymph nodes were removed they can't ever try to use my right arm for vein access unless it was life or death. Chemotherapy damages veins, their toxicity is such that they can only use the same vein about twice for chemo, when I'll need to have 8 or so batches. That would mean that they would have to find veins in all sorts of other places; feet, knees, hips, etc. No thanks, I'm not doing that.

So the vein lady suggested a "device" instead. Three to chose from, but I've opted for a "Portacath". This is a little round bit of plastic that sits inside a really thick, strong, hardy vein just below my neck. They'll be a little raised bump protruding out of the skin - I'm regarding it as a "mini-boob" to replace the one they're taking away. There's a round disk of what looks like the best middle bit of a Jammy Dodger facing up, which can be stabbed 2.000 times. It means they'll have to stab through my skin every time, but the vein lady is organising warehouse quantities of magic cream just for me as well as a sedative beforehand every time. Two reasons I went for this one - there is nothing sticking out, so my lovely son T will have nothing to pull at, which he loves to do. The other reason? It's the only one of the 3 devices where they have to put it in with a general anaesthetic! Result! There's no way in a million years that a needle-phobic like me would sit passively patient and co-operative while they dug around in large veins to insert something, then thread it all the way towards my heart. It's not a perfect solution, nothing is, but it's a pretty award-winning compromise, if such a thing existed.

However, this now means that I may have the mastectomy at the same time as the portacath being fitted, which would mean delaying the chemo until 4 - 6 weeks later. Lots of worry there, then. I was so pleased that the cancer hadn't spread last week, but it seems a bit like tempting fate to give it another several weeks to keep trying. However, I also feel quite squeamish that the cancer is still firmly locked away having a party in my right breast, whatever they didn't get the first time round has probably grown and spread to fill the void by now.

I'm also fairly certain that I'm going to ask them to take away the left boob too. As a friend put it, boobs don't really work in ones. I never made it as a page three girl in my youth, so I very much doubt that if I only have one they will ever give me a slot on page one-and-a-half. My decision is mostly because I'm very frightened of the cancer recurring. My chances of it doing so are fairly through the roof - two primary cancers, both starting to spread already, found at the same time - recurrence is very likely indeed. Already, since diagnosis they have found two separate "areas of interest" on the left side in addition to the definite tumour. For the rest of my days I will live with the fear of recurrence, and face frequent mammograms and biopsies to boot. If I ever get past this cancer saga, I won't want to be looking over my shoulder all the time.

So the cancer team have to decide how to kick start the next phase - with a mastectomy first or chemo. My job is to sit at home, looking beautiful, waiting for the phone to ring. Meanwhile, I'm loving every minute of these unexpected stolen few days of very happy relative wellness. I'm falling asleep as I write, so I'll finish it here, but I'm buzzing with so much to say that I'll be back with the next one very very soon.

Tuesday, 10 July 2012

You get to see an awful lot of hospital departments once they decide you have cancer, and it seems that barely a day goes by without an appointment of some sort, or a phonecall, or a letter arrives. In my case, from the outset, every single time I've had any sort of dialogue whatsoever with the cancer specialists, there has been at least a little bit more of the bad news. The size and shape and colour and rate of growth and seriousness and treatment plan has just grown increasingly concerning, and significantly more serious by the day. Today, I opened the letter from my oncologist, and I know enough about reading between the lines of medical letters to understand the implicit subtext of the words "I was sorry to inform her of the histology...." to know that it was going to be yet another difficult day.

Luckily I was wrong! Mid-afternoon the phone rang. It was Lisa, the Breast Care Specialist Nurse from the hospital. Finally, a bit of good news. On Friday I had both a body and a bone scan, to see if either of the big city cancers in my breasts had started to build little suburban village cancers anywhere else in my body. Like any other rapidly developing community, all these little cancer cells need somewhere warm and cosy to live to enable them to carry out their work effectively, and although it wasn't actually voiced, the feeling loud and clear in the consulting room at the hospital last week was that my cancer would probably have started to go forth and multiply uninvited across whole swathes of my organs. I know the statistics, and I knew my odds weren't great. Although it is true that many women in that situation can survive for several years, if it had started to spread already, the average survival rate is only 18 - 24 months.

The good news? Both scans seem to indicate that it hasn't started spreading. My immune system has kicked in somehow and refused to grant planning permission to those cancer cell town-planners. This doesn't mean I'm out of the woods yet, and I still need more major surgery, chemotherapy, radiotherapy and several years of pills to take, but it does mean that I might not die quite soon. This morning I thought I'd never get my granny bus pass, this evening I'm allowed to dream all those unfulfilled dreams and they might actually happen. Winning Wimbledon, becoming a Prima Ballerina, writing a best seller about how I did them both together, tonight anything is possible. Please don't ask me how I'm feeling because it simply isn't all black and white. Of course I'm relieved, but that is heavily tempered with fear, both of the treatments ahead, and the worry that they may have missed something. It also doesn't mean that the cancer hasn't started spreading yet, because any new cancer would have to be at least half a centimetre to show up on the scans. However the idea is that if there are any tiny little clumps of cancer cells, the chemo will send it packing. Such a shame that ring doughnuts don't seem to work in quite the same way.As far as the chemo is concerned, I'm started to really get in a tizzy over it. It's the thought of those needles that just has me in a flat-spin, heart-palpitations, hyperventilating, adrenaline-racing panic. Apparently I'm in good company, because both Alice Cooper and Jackie Chan share my thoughts about needles. Our phobia even has a name all of its own - Trypanophobia - which at least indicates that I can't be the only person who lies awake in sheer, unadulterated terror night after night about it. I've been so brave and brazen about naming my fear since I've had cancer, and I have to say, despite all my fears that the medics would laugh like crazy and think I'm pathetic, they have actually been very supportive. On Friday I was given a "happy pill" before the blood tests and radioactive dye was injected, and that did help quite a lot. On Wednesday this week, I'm seeing a specialist intravenous expert, who can talk through the various options with me concerning intravenous access for the chemo. The only problem is that all the options involve somehow puncturing a vein, something any sensible person should avoid at all costs because how can that possibly ever be good for you?

Back to my good news. Having spent the last 8 weeks learning how to take bad news on the chin again and again, and somehow trying to get my head around it, it's going to take a while to actually believe that things might turn out OK after all. The one bit of hope that I treasured in all of the bad news was that they might have decided that I was such a hopeless case that all this vein puncturing nonsense was going to be a waste of resources, and let me off scot free. I would then, of course, have embraced every iota of the alternative cancer therapies and drunk green tea and tumeric until I had had enough to swim my way out of trouble. Now, with the chemo, I'll probably throw it up before it can do any good. That's if they can catch me with those needles first. Yes it has been a good news day, but I just don't want to tempt fate by celebrating like their really will be a tomorrow, until I know for certain that there definitely will be thousands of them.

Wednesday, 4 July 2012

Back from the hospital, and I now know some, but not all, of the bare facts about my cancer, and it's quite a lot to take on board. I haven't even begun to try and get my head around any of it yet, so I really don't know how I'll feel about it when I've taken everything on board properly, but right now I'm a little shocked, but mostly upbeat and cheerful. Even my Consultant said I was the most positive patient she had ever met, which made my day a bit! It's probably not true, but I can put a very good front on.

So here it is.

1. Right boob, loads more cancer still left there, and it's much bigger and more widespread than they had any inkling of before surgery. Only option is a full mastectomy.

2. Of the 25 lymph nodes they removed, 9 are cancerous. I thought this was amazingly brilliant news, less than half, but apparently it's not. I had this idea that the lymph nodes were like stepping stones across the river, and the cancer had to virtually reach the other side. Well they are, and it can, but whilst it's on any of those stepping-stones, it can also chuck a load of nasty cancer cells into the river, which can then be carried around the body. OK, so I wouldn't pass any medical exams with my rudimentary biological knowledge, but the troll on the bridge with the nasty bag of cancer-poison to spill is an analogy I can understand. To cut a long story short, 9 cancerous lymph nodes is not as bad as all 25, but it certainly isn't cause to put the champagne on ice either.

3. They now have to do two CT scans, one to see if there is any cancer elsewhere in my internal organs, and one to check all my bones for signs of it. The CT scans both mean I'll have to have a canula fitted, which is a source of huge anxiety to me.

4. Needle-phobic or not, I will never be able to have any injections or blood tests in my right arm in the future, because I no longer have lymph nodes to protect me from infection there. This means that future vein access is going to be even harder to gain, because they only have one arm to try now.

5. Once they've done the CT scans, they should know if the cancer has spread, and if so, how serious it is. If it has, cures are unlikely, but they will then try to "manage" it. I was told that some people can live for a very long time with it being "managed".

6. However, any tumour would have to be at least 0.5cm to be visible. Cancer may have spread but still be at cell level, so it wouldn't be picked up.

7. It turns out that the cancer in my left boob was worse than they thought too, and had started spreading, although they are pretty sure they have got it all. However, if the bone and body scans are clear, they will now want to remove and test the lymph nodes on the left side too to get a clearer picture of the likelilhood of actual spread. Hopefully, they would only take the first three, but it could be that all of them get removed. This would not be good at all - I'm going to have long-term difficulties with my right arm, I really don't need the same with my left.

8. I now definitely need chemotherapy. Probably 6 - 8 sessions, 3 weeks apart, to start in the next couple of weeks and go on until around Christmas or maybe a bit after.

9. Once Chemo is finished, I then will definitely need several weeks of radiotherapy.

10. Once they are both out the way, then back on the operating table to have the mastectomy.

11. Then 5 years on a Tamoxifen-type drug. This is good news too, really, because they know that both the primary tumours they've found are oestrogen-receptive, so it follows that any secondary tumours spreading from these will be too. The Tamoxifen family of drugs blocks oestrogen production, which means that the tumours can't grow easily, and in some cases can shrink.

Then the good news - they are planning treatment for the next SIX years - that's pretty flaming encouraging! WM and I went for a rather nice lunch afterwards. Chemo won't start for 2 - 3 weeks, so I've got time to get completely better, and maybe even get a little bit of fun in first.

Thank you for all your messages, some as comments on the blog, some in texts, some on the phone, some on Get Well cards, some on Facebook. It really is lovely to know how much support and encouragement I'm getting, in fact I've been overwhelmed and humbled beyond all measure by all your kind words and warm wishes, and I really am very grateful.

Tuesday, 3 July 2012

Tomorrow is a very big day - I'm back at the hospital to find out exactly how big a threat this cancer is. When they operated, they took out three lymph nodes to test to see if it had spread, and it had, so they then removed all the right armpit lymph nodes to test the rest. Having read everything I can find to read about it, I now know that there is a direct correlation between how many lymph nodes are affected, and my likelihood of survival. It's all terribly exciting really.

I'll also find out if they got enough of the lump out during surgery, or if they need to go digging around again to find any more cancer-contaminated tissue. Straight after surgery they told me it was bigger than they had thought, and that they "didn't like the look of" the surrounding tissue, so I'm fairly convinced they'll want another go at it, and also that maybe this time they might want to go the whole hog and do a mastectomy.

Then, just to ensure that they do what they can to completely ruin my day, I'll be told what treatments they're planning for me. Isn't "treatment" a funny word? I think of treats as ice-creams and trips to the theatre, or a decent bottle of red wine, but I think they're more inclined to "treat" me with therapies of the chemo, radio and hormone variety. It's debatable as to which would do me the most good.

I'm actually really looking forward to knowing whatever they are going to tell me tomorrow - at least then I'll have a much clearer idea of what's going on, and where we go from here. This no-man's-land of uncertainty is much harder to deal with. Whatever the truth is, I can deal with it far better once we have tangible facts to think about.

Apparently I'm just like everybody else who gets a cancer diagnosis. When they say the word "cancer", we all initially hear "death sentence". Our close family and friends also fear the worst, but then follows several weeks of quite hilarious dancing around the subject. In my case, I wanted to acknowledge that death was at least one of several possible outcomes, but no one else wanted to have that conversation. Instead, everyone was annoyingly upbeat and dismissive of any negativity at all. I could see that fear in their eyes whenever I tried to manoeurve the conversation towards my possible early death, and I could almost hear the cogs in their brains working in overdrive as they invented new and creative verbal dance-steps in an attempt to outwit me, so they could bring the subject safely back into the realms of happy, nice, sunny, positive thinking.

Positive thinking is all well and good, but not at the expense of dealing with the here and now realities of the situation. I'm a single parent with three disabled children, and it would be the height of irresponsibility not to at least make rudimentary contingency plans. My own mother died when I was only 19, so I know how devastating it is to lose a parent far too early. If there is anything I can do now that might minimize the effects of my potential premature death, then let's do it. So the week before surgery, I wrote a will, with clauses to protect the financial interests of T, my profoundly disabled child. Complicated, but it felt really good to tick that box. It's ridiculous really, it should have been done years ago, but this has galvinized me into doing it. When the final draft of the will had been agreed and was ready for signature, I was actually very nervous crossing the road to the solicitors office in case that proverbial bus with my name on it decided to visit. That really would be pants, to have cancer AND to fall under a bus. Then there were one or two other, tediously boring but essential bits and pieces to do, just so I could give myself a little bit more peace of mind.

When I'm good and ready, my positive thinking will have me flying, and will terrify any last little cancer cells into submission - I'll have them running for the hills like they never knew they could run. However, it will have to be on my terms, after tomorrow when I not only know the full facts, but I've come to terms with them properly. Until then, I reserve the right to screech like a wounded animal if I need to over the next few days, and to behave like a perfectly disagreeable human being, and then some. This whole possible dying malarkey is fascinating really. One day it will definitely happen, I just hope to be in my nineties when it does. Meanwhile, there are loads of things I can do to make my longevity much more likely, and I've read up on loads of stuff that really can help to increase the odds. There are no absolutes with cancer - some people who seem like they have cracked it don't make it, and others whom the medics gave up all hope for, are still around decades later, like my aunt. One thing I really hate is the semantics surrounding cancer recovery or otherwise. It's all so military and aggressive. I have absolutely no intention of seeing myself as a "victim" who has to "struggle" to"fight" and "battle" this "bravely". Whether I win or lose this thing, this vocabulary is really unhelpful, and the inference is that those who didn't make it were in some way "losers" or didn't "fight" hard enough. I am not brave, and I am certainly not a victim. I have cancer at the moment, but that is only a tiny part of who I am and what I am. I'll find a way to handle this that's right for me, however odd or quirky it might look from the outside. Just a quick update on how I've been - totally lousy until today. Won't bore you with the details, other than to repeat what WM said to me this morning, "Oh my God you must be better, because you're being really annoying". Ha ha ha I must be back in business!

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.